I've had CRPS type II for seven years after a venipuncture nerve injury. Although it's not improving, it's not getting worse either. I'm on gapapentin and Cymbalta, and with meds, biofeedback, exercise, keeping warm, etc., it's generally under control and I can work and mostly function well (although I get fatigued way more easily -- never used to nap). I consider myself to be one of the lucky ones, and mentally am able to deal with it much better. The first three years were really rough and now the symptoms, weight gain, fatigue, etc. are just part of everyday life for me.

In my case, symptoms spread to upper quadrant of body (overnight) after 10 months, then to entire right side of body (overnight) after 2 years. Strongest symptoms are generally in limbs and head, and not as much on torso/back. However, during flareups I definitely have symptoms (burning mostly) in groin areas. Usually only exterior, but sometimes vaginal discomfort also. It's easy in my case to tell that it's CRPS-related because it's only on one side.

Good luck!

I can not find contact info for dr harbut. Also is he a neurologist?

Can u please point me in direction of pelvic rsd doc.

do you yourself have pelvic rsd? I would love to know more about your struggle with it if that is the case i have not met anyone else with pelvic rsd

[QUOTE=alt1268;892014]AZ - Dr. Siwek , Dr. Turley will only see you for booster

Are these the physicians who treat pelvic rsd?

I've tried to find and reach b ingle...... Do you know of physicians who specialize in full body yet 95% pelvic/ab rsd......
Thank u for clearing this up

Looking for dr harbut contact info-had many leads yet no luck finding a correct contact number. Can u help?
Also still looking for physician for pelvic/full body rsd?
Any info?

dear bel....
Have u found any help? I too am searching for help with pelvic crps

Check out the ketamine Klub for CRPS/RSD on FB. There is a doctors list.

The best of luck to you.

sandy

[QUOTE=belichkah;893283]do you yourself have pelvic rsd? I would love to know more about your struggle with it if that is the case i have not met anyone else with pelvic rsd[/QUOTrecurs

Yes I have had pelvic perianal vaginal rectal rsd for five years.
Spread to digestive system. Now full body. Just finally diagnoised. I can not even use the bathroom all is closing up descending swollen atrophied tight prolapsing....on top of all my other issues.

Please...I am confused as to who helps patients with pelvic crps. I am in big trouble. Water burns. Using bathrom rips me apart... I am unable to stand wk sit it is horrid... My pelvis is twisted and hard as a rock.... As is the ret of me.

Please...could someone list doctors that help with pelvic crps. My perinum. Has descended below my **** opening which is prolapsing with painful tissue swelling all my tissues are hard and red and shrinking and do painful.


Everyone is speaking if doctors in az? Could anyone please assist me with finding a crps pelvic perianal specialist. I've been searching and calling to no avail

Anyone can pm me and we can talk-even by phone
Love to all